Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Wednesday, September 29, 2010

For whatever reason recently, every-day things are triggering washes of memory. It happened here, when I wrote about my association between the perfume bottle and my mother (something I think about every day, often several times, and have for years) and ended up with Ritz crackers and peanut butter for lunch in grade school. On the white plastic plate with a line sketch in blue of a boat.

It happened the other night when some TV show (Grey’s Anatomy?) had someone in an operating room for brain surgery, which transported me back to my operating room experience: I didn’t move myself from a gurney to the table the way it was portrayed on TV. This wasn't just a recollection, it was the sense of being overwhelmed by the memory, as all of these incidents have been. When I call it a wash of memory, that's what it feels like.

It happened last night, when my dreams were flooded with people from my childhood about whom I haven’t thought in years. The mother of my childhood best friend featured prominently in last night’s dream, though in it she was more than six feet tall and I don’t think my friend’s mother was.

These intense recollection experiences are strange and seem particularly concentrated right now, at the same time as my thinking processes are becoming more fluid, if that makes any sense.

Since this adventure began, I’ve had the sense that my thinking feels different than it used to. I’m not sure that, before this strange series of events, I ever really thought about how it "felt" to think. How it "feels" has gone through a number of distinctly different phases. None, at least not so far, are like it used to feel when making connections, integrating and synthesizing information. At the same time, I’m closer to my old self than I have been, while still being aware, acutely, of the deficits. Each one of those deficits can be compensated for, but that doesn’t make them go away, it just covers them up. Still, that's good enough for me right now, when you look at the overall balance.

Now, I’m going to see if I can locate the family of my childhood best friend somewhere and send them a card.

Wednesday, September 22, 2010

Usually, as I drift off to sleep and as I wake up, I think about things to write here. The main problem now, other than energy, which is getting better and will improve a great deal more next Thursday when the MBA class ends, is that there are so many things I shouldn’t write about: I shouldn’t write about my students and I shouldn’t write about the project that’s on the verge of being announced. Those are my two major preoccupations at the moment, and as I’m not good at dissembling under the best of circumstances, the consequence has been the radio silence here. I’m hoping that will end soon, as I’ve enjoyed the interactions this forum has provided. The beautiful weather hasn’t helped much, as it’s been alluring to go sit outside in the sun in the odd snatches of time here and there that aren’t consumed trying to crank this project and these two classes through right now. Today, it’s the start of the autumn thunder season, one of my favorite parts of the year, and we have thunder, lightning and rain. It’s cosy, being inside with Michael, and I’ve been thinking about something lately that’s not on the “shouldn’t” list; oddly enough, it’s focused on a perfume bottle.

Every time I go up our stairs, I see the decorative perfume bottle my mother had on her dresser as long as I can remember. It’s long since empty, and my sense is that she kept it on her dresser for a while in that state, though of course it was long enough ago that I cannot really tell you anything with certainty. It’s a pretty thing, and seeing it never fails to transport me back to where it stood, on the corner of her dresser, on a lacy dresser cloth, against the textured, neutral bamboo-y wallpaper.

It’s nice to have a tangible reminder, though of course I’d think about her even without it. Though my mother died when I was 12, I have echoes in my head regularly of things she said, or did, or wanted to see happen for me. She’s always present with me at the major events of my life, and when I succeed at something, and when I fail. When I write, I think of my mother, remembering the first “research paper” I had to write in fourth or fifth grade, and her coaching at the kitchen counter while I struggled to produce my TWO WHOLE PAGES of essay. I still fall back on her advice when I’m stuck.

The weather and thinking about writing a paper at that kitchen counter makes me think of school lunches in this kind of weather: we walked home for lunch every day back then, even in the rain, and the standard lunch I recall was Ritz crackers with peanut butter and vegetable beef soup. The counter was white, and my lunch plate and bowl were plastic with sailboats on them. Strange, the things that memory provides.

Anyway, I’m still here. I am still working to improve my balance and manage the available energy, and trying to remember to do the exercises to keep my shoulder loose and functioning. So far, I’m making some progress on the weight thing, though I’m going to hold off on saying much about it until the first ten pounds are gone. That will be a good day, and at that point, I’m hoping it will feel like both a successful effort and something that can be sustained for a while. Back to work for me, now.

Friday, September 10, 2010

One of the hardest lessons I have learned over the years is how often less is more. This applies, I’ve learned, in writing, in handling disputes, in managing, and even in my slap-dash approach to cooking. As a fan of flavor (lots of it), it’s taken me a long time to get to the point where I’m willing to try Michael’s more restrained approach to some items. That leads me to the question on this second anniversary of my craniotomy: is less me also more?

While two years ago right now I was having an MRI with the facilitators on my head for the final brain map that was used to guide the coming surgery, this morning I’m getting ready to go teach a new class of 600 students, divided into two pots of 300, plus oversee the platoons of people working on this endeavor. It’s a testament to the medical skill, love and support that’s been the mainstay of our lives these past two years. At every single moment, we knew that our community of friends and family had our backs and was there with us. Our relationships have been enriched and strengthened. We’re more for that.

As for me, I am working, can do most of what I want, and have learned, mostly, to cope with the limitations and deficits of the new me. The ability to read fiction fluently and on demand never has come back; it still flashes glimpses now and then, but it’s a view of foreign territory most of the time. There are holes, pretty big ones, in my memory. My energy levels are much lower than they used to be and I miss being able to do whatever I’d set my mind to. At the same time, I have learned a lot by being the slow tortoise and managing my commitments more strategically. Out in the world--except when I’m going down stairs or in a noisy place--you’d never know about the limits. That they don’t show is a godsend along, I suppose, with the perfect hair for brain surgery. Two years ago today, they were getting ready to shave the alley where the incisions were made in preparation for peeling my scalp. That is as odd as it sounds.

I spend vastly more time not out in the world than in it; so long as I circumscribe my outings, I can make them. When I travel, I have to budget my energies differently--but look at the beginning of that sentence: “when I travel.” I can and do travel, and I can and do work. Those are gifts and I don’t take them for granted. Sure, there are things I’d like to do that aren’t possible anymore. At the same time, there are many, many more things that I can do.

Most of all, as from the very beginning, it’s all about the people. The people who helped us with navigating the thickets of the medical problem, the people who sat with Kearney and Michael, physically and virtually, during surgery, the people who brought food, the person who left a single stalk of a gladiola on our front porch the day after we’d learned there was a tumor the size of a baseball in my head, the people who were there through a long journey back to reality. The friend who sent songs, with the message that the best way to express love was to be unafraid of embarrassment. The friend who coined the term cranioversary for these days. Really, all the love that came our way, in so many forms, each of which we recognized, embraced and caused us joy. Coming back atcha today.

Wednesday, September 1, 2010

Well, here it is Wednesday, with only one more thing on last weekend’s to-do list yet incomplete. As soon as that is done, I think and hope I’ll be caught up with all the things that got pushed aside to accommodate the major time sink the end of summer project became. That will be final and permanent and pubic soon, I hope, and then it will be time to move on to the exciting and fun phase after the not-so-fun, interminable and enervating phase.

With the backlog (almost) cleared, the next big task is to figure out a rhythm of life that fits and feels right. There are glimmers here and there of how to sort things out and they look fun and promising. That’s the case even though I’m beginning to form a conclusion about how many holes in my memory my compensation systems are making. Filling out a medical form yesterday, I clearly remembered that I’d gotten that biopsy last month, but couldn’t for the life of me remember why. That was strange and as I was saying, “I just don’t remember,” it suddenly dawned on my how often I’m saying that these days, and how ferociously I’m concentrating on the core areas of my life--and how much of the other stuff is falling by the wayside. Who knows what elements of this are age-related and what come from the medical adventure, but it was a little eerie to stop and tally up how much stuff I just do not have a handle on anymore. Still, the compensation mechanisms are working well, and as I have little choice, I’m cheerful about saying “I don’t remember” and it usually all works out.

The biggest hole is retaining student names. I’ve never been great at names (and always execrable with titles), but it’s now much, much worse. And, I’m in a place populated with people who really focus on and drill each other on names, so it’s conspicuous. I’m trying new systems for keeping track better and while I doubt it will improve things significantly, if I can keep it from getting worse, that will be enough for going on with.

The team of people I’m working with this semester is a strong and fun one, and this semester brings the culmination of most of a year’s work on this new course, so that’s fun. The school year started well (that consumed all of last week) and I’m hopeful for the rest of the semester. It startled me when, last week, the night before the first class, I had anxiety dreams all night: I haven’t done that about teaching in years. This time, though, I dreamed of being in the building, but forgetting to go down for the first session, forgetting to take along the clothes I was going to wear, etc. etc. etc. It makes sense, given how much work it’s been to get this thing going, but it did catch me off balance. Oh yes, and one of these dreams featured taking a baby along to class with me, dressed in a t-shirt that made it look like the baby was wearing a business suit. The mind does strange things.

That’s enough procrastination for the last major job to close out the summer’s work. I hope to post more regularly, if my aspiration of having things under better control comes true. Happy Wednesday to all.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.